End of Life

Warehousing the disabled: The case of Ron Wilkison

A little over four years ago, on Sept. 30, 1999, Ron Wilkison’s life changed forever. The 31-year-old New Castle, Pa., native was on the job about an hour south of St. Louis, Mo., driving for Midwest Delivery. Unable to stop in time, Ron’s vehicle skidded onto a four-lane highway and collided with a tractor-trailer. The outlook for Ron was grave: He survived, but suffered a severe brain injury.

A person not a vegetable

Ultimately, what made Ron’s future so precarious was not his actual injury, but the warped way society and many in the medical community increasingly view victims of debilitating brain injuries: as “vegetables” whose lives no longer have meaning. The recent case of Terri Schindler-Schiavo, the disabled Florida woman whose husband is on a personal crusade to end her life by starvation, has brought discussion of euthanasia and the rights of disabled persons to the media forefront. It has forced many to reevaluate—for better or worse—their own views on the treatment of the ill and disabled.

Like the parents of Terri Schindler Schiavo, Ron’s parents, Sheryl and Ronald Wilkison, are fighting for their son. Their case is not about the removal of Ron’s feeding tube, but concerns the right to bring Ron to his native home in Pennsylvania, where his family can be close to him and give him the love and rehabilitation he so desperately needs.

Along with numerous other brain-injured patients, Ron was given an inadequately short period of rehabilitation before being declared “vegetative.” While Ron is, for the most part, incapacitated, he can breathe on his own and has responded to family and friends, particularly his mother, Sheryl. “He was once responding well and even called me ‘Mom’ a couple of times,” Sheryl says. “But the doctors decided that the injury was too bad and that he would never recover. People have discovered now that some people with the same diagnosis have recovered.””

“My son, along with a whole lot of other people like him, are just placed in nursing homes somewhere and warehoused!” Sheryl says.

Dubious guardianship

Currently, Ron is being held in the Lutheran Convalescent Home in Webster Groves, Mo., and is a ward of the state. Herein lies the problem.

The Wilkisons’ best efforts to gain guardianship of their own son and permission to bring him home have been frustrated at every turn. Following Ron’s injury, guardianship was initially granted to his wife, Christy. But in May 2002, Christy divorced Ron, thus dissolving her responsibility as guardian. Curiously, Ron’s parents were never notified of this development. Until the situation was eventually discovered by their attorney, the Wilkisons were totally unaware that the Probate Division of Circuit Court in St. Louis County had appointed a public administrator, Thomas Arras, as Ron’s new guardian.

“We were never notified that anything was going on, so how could we apply for guardianship of him?” questions Sheryl. “We found all this out by accident…I am named as the number two [guardian] on the original documents, so why did they not have to notify me?”

Even though Missouri law plainly states that, “a person need not be a resident of the state of Missouri to qualify for appointment as a guardian or conservator,” the St. Louis County probate court appears to apply its own set of rules. According to a statement in the New Castle News made by Frank Natale, the Wilkisons’ attorney, “They [the probate court] will not appoint a non-Missouri resident as guardian, even if it’s a family member.”

In addition to these obstacles, Ron’s parents were also denied permission to bring their son home to Pennsylvania, even for a visit. Not surprisingly, this point of contention can be traced to a simple source: money. In the probate court’s order denying the Wilkisons’ request, Deputy Commissioner Kimberly Coon stated, “Due to uncertainty concerning payment for his care if transferred, the court…denies the petition to transfer Ron J. Wilkison, Jr., to Pennsylvania.”

The actual circumstances surrounding the supposed “uncertainty concerning payment” are suspicious, at best. Attorney Robert Evans of St. Louis was appointed to handle this case on behalf of the workman’s compensation carrier for Midwest Delivery, Columbia Insurance Group. Originally, Evans had agreed to transfer Ron to a Pennsylvania facility that is not only cheaper than the nursing home in Missouri, but also willing to provide Ron with much-needed rehabilitation. Evans, however, abruptly reneged on his decision. Speculation exists that Evans’ refusal to allow payments for medical care in Pennsylvania may be based on the appalling expectation that Ron will die if left in his current surroundings, where lack of stimulation may affect his strong will to live.

Even though Sheryl flies to St. Louis once a month to see Ron, the pain of being separated from her son is apparent: “All we want is for our own son to be at home with his entire family and friends, who would be able to visit him on a regular basis, not 600 miles away where he has no one,” says Sheryl.

Waiting in hope

The Wilkisons have done everything in their power to remedy Ron’s isolation. Not long after the accident, Sheryl contacted registered nurse Nancy Valko, president of Missouri Nurses for Life and advocate for patients with disabilities. Nancy gave Sheryl information on her innovative work with brain-injured patients and offered to begin visiting Ron on a regular basis.

“I have been seeing Ron weekly for years,” Nancy says. “I talk and pray when I am with Ron, and I do what is called ‘coma stim.’ I accidentally discovered stimulating brain-injured people 30 years ago when I found it helped a 17-year-old accident victim wake-up.”

“Back in 1971, before ‘vegetable’ was a diagnosis, I worked in an ICU where most of our patients were trauma victims or patients who had brain surgery. The other nurses laughed when I talked to apparently comatose patients, and even asked if I talked to my refrigerator—until one of our patients eventually woke up and said that he remembered the doctor calling him a ‘vegetable.’ Over the past 30 years, I have continued to do ‘coma stim’ on many so-called hopeless patients, and I’ve seen the often-amazing results. Over time, many people have been referred to me, either through reading my articles on the Internet or through pro-life sources.”

The Wilkisons remain hopeful that, until they are able to take charge of Ron’s care, Nancy’s visits will bear fruit for their son. “[Recently], Nancy was visiting Ron…and he made noises that were coming past the vocal cords,” Sheryl explains. “She was telling him to say ‘ma, ma, ma,’ and he did. She said it was just above a whisper.”

Even though the battle continues to wear on, the Wilkisons try to remain strong, holding fast to the love they have for their son: “Ron was the life of every party,” Sheryl recalls fondly. “Everyone loved him and he was one of those people who got everyone’s attention.”

“Nobody knows what it is like to have a son who is perfectly normal one minute, and can’t talk, move or eat the next. All I know is that I believe in miracles and will never give up hope.”

Ron’s story reminds us not only of how fragile and unpredictable life can be, but also of how morally fragile our culture has become. Like Terri Schindler-Schiavo, Ron Wilkison has become a victim of our society’s disregard for the sanctity of human life, especially those lives deemed “inconvenient.” May Ron’s story, and the stories of others like him, be a wake-up call for all who turn a deaf ear and blind eye to those who are forgotten—those who are “warehoused” or worse—in our society.

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About the author

Kristin Giganti

Kristin Giganti is a free-lance writer from Alexandria, Va.